At Home, But Not Alone: Four Things I Wish Caregivers Knew Sooner

By Sabrena Freeman, Capital Blue Cross

A fall. A hospital stay. A change in memory or behavior that feels different this time.

That’s usually when I meet families in my role in care management – when something already has happened, and a caregiver is trying to figure out how to move forward and manage their loved one’s care day to day.

More often than not, the answer is: continue care at home.

Today, about 80% of people with dementia are cared for at home, often by family members. In many ways, that’s a positive shift. People usually want to stay in familiar surroundings, close to the people who know them best.

But I also see what it can mean for caregivers, who often find themselves managing medications, coordinating multiple doctors, and balancing their own work and family responsibilities – all at once. It can quickly become overwhelming, especially when help isn’t sought until a crisis hits.

How caregivers can navigate the process

Here are four things I wish more caregivers knew sooner:

1. Start earlier than you think you need to.

One of the biggest differences I see is between families who plan ahead and those who are reacting in the moment.

Early signs of dementia can be subtle – forgetting names, misplacing things, changes in mood or behavior. These don’t always feel urgent. But they’re a signal to start a conversation.

Talk to your primary care provider. Ask questions. When we’re able to connect with families earlier, we have time to:

Assess what might be needed down the road.
Identify potential barriers.
Start introducing resources gradually.

Planning early doesn’t mean you need everything in place right away. It just means you’re not starting from scratch when something changes.

2. Understand what’s covered – and what isn’t.

Many people assume long-term care will be covered by health insurance. In most cases, it isn’t. What is covered depends upon the terms of your policy.

If coverage is provided, it tends to be limited to short-term treatment or services that are determined to be medically necessary – like home health visits, physical therapy, or medically based support after a hospital stay. Custodial care, residential care, and assistance with activities of daily living (bathing, dressing, eating, etc.) are typically not covered under health insurance.

Review the terms of your health insurance policy carefully. That means caregivers often need to look beyond medical benefits for long-term support. This can include:

Local agencies on aging.
Meal programs like Meals on Wheels.
Transportation services.
Community-based, in-home support.

These services can make a big difference, but they can take time to find and set up. You should also check to see if your loved one has long-term care insurance available, which is totally separate from health insurance.

3. Build a team – even if it’s small.

Caregiving can feel very personal, and many people feel like they should be able to handle it on their own. But this is typically not meant to be a one-person role.

Think about building a team around you. That might include:

Family members or friends who can help with specific tasks.
Your loved one’s doctors and care providers.
Community organizations.
Care management support, if available.

Just having someone help coordinate appointments or connect you to resources can take a lot of pressure off.

A big part of what Capital Blue Cross does in care management for members is help bring those pieces together – making sure providers are aligned and helping families understand what support is available.

4. Plan for breaks before you need them.

One of the biggest risks for caregivers is burnout. I’ve seen people put everything they have into caring for a loved one, and it can take a toll – physically and emotionally.

That’s why it’s important to plan for breaks ahead of time. This could look like:

Arranging for a family member to step in periodically.
Connecting with community respite services.
Scheduling time for your own appointments and needs.

Taking a break isn’t stepping away from caregiving. It’s what allows you to continue.

More families are choosing to keep their loved ones at home – and in many cases, it’s the right decision. But the most successful caregiving situations I see have support behind the scenes.

Support in understanding the system.

Support in coordinating care.

Support in knowing what to do next.

Because caring for someone at home shouldn’t mean carrying everything on your own.

Sabrena Freeman, a former long-term care nurse, is Director of Care Management for Capital Blue Cross’ Medicare and fully insured members.